Where a select few know your name — and history
Controllers could find AWOL patients in registry
A nationwide listing of the names of TB patients who’ve skipped town could save TB controllers a lot of trouble down the road. That conviction has some TB experts in the country calling for the creation of an "AWOL TB patient registry," as the concept has been dubbed.
"If you get a patient and he’s new in town, the logical question is whether someone else is already treating him," says Jon Tillingham, MD, Oklahoma’s TB controller. "If you can’t get anything out of him, but you had a database where you found him listed, all you’d have to do is make a phone call."
As many as a fourth of all patients who default from treatment might qualify for membership in such a registry, he says. "Probably 75% to 80% of noncompliant patients will tell you, later if not sooner, if they’ve been on therapy somewhere else," he says. The rest won’t, either because they don’t want to or because mental illness in one form or another prevents them from doing so."
In Oklahoma, TB controllers recently spent four months hunting for a patient who’d taken off, it turned out, for San Antonio. "We don’t know if he was seen by anyone there or not," says Tillingham, "but if he was, having this registry might have simplified things."
Randall Reves, MD, the medical director of Denver’s TB control program, also likes the idea of the AWOL TB patient registry. "We all have a sense that certain patients are more likely to disappear than others," he says. "Especially with the chronically mentally ill, there’s good reason to be concerned about how good your health history is."
How soon someone missing from treatment would be eligible depends on the case, adds Reves. "If they’ve only completed a week of therapy, and they’re still infectious, and your sense is that they’ve left town, I think I’d probably put them in."
Neither TB controller thinks the registry would pose a threat to patients’ privacy because safeguards presumably would be installed to bar anyone except legitimate users. Still, a few other considerations would need careful attention, they say. For one thing, TB controllers who used the registry would need to make sure they were justified in posting someone’s name. "You wouldn’t want somebody to get snagged by mistake — jerked off a plane or something," says Reves. By the same token, even those who deserved their spot on the registry would need to be taken off once they’d completed treatment.
How long could someone’s name reasonably remain on the list? "Maybe after two years you’d take them off and put them into a sort of archive," Reves suggests.
The only detail yet to be worked out (in the minds of registry proponents, at least) is the question of who actually would maintain such a registry. It can’t be the Atlanta-based Centers for Disease Control and Prevention because that entity is empowered only to tally numbers of TB patients, not collect their names. Maybe, says Tillingham, the most logical place to house the registry might be with the National TB Controllers Association (NTCA), also in Atlanta.
Though support for the idea of creating the registry seemed strong enough when it was first broached in a committee meeting, NTCA members gave it only a "lukewarm" reception later, says Tillingham.
"I think that may have been the lateness of the day," he adds, more than the merit of the idea.
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